Duration of fatigue

[Dr.Patient]

Do not do any physically exerting thing to your body. This is one thing that will keep you from getting worse.

 

[minkeygirl]

Nice thought but impossible unless you have someone to take care of your every need. For some the simplest task is hard. Mental exertion is just as exhausting as physical exertion.

Anyone who has to work like @sming or live has to exert themselves.

 

[optimist]

@sming
...
Patients who get the right care within the first 3-5 years of the illness have a much greater chance of remission than patients who don't. No sense in missing that golden window.

There are only a handful or two of top ME/CFS specialists -- very, very few in most parts of the world -- so most of them have long waiting lists. I suggest you get on several waiting lists now.

I did not know that! I am starting my fourth year now. My GP has nothing to offer me except waiting and hoping it will go over. Only heard of four ME specialists in Norway, and they live far away from where I am... So, I guess you guys be my "doctors" that I'll consult then

 

[Scarecrow]

I'm not sure why you beat yourself up over something gyou have no control over. A waste of energy IMO.

You don't want a disease that has no treatment.

Both good points @minkeygirl but I suspect that sming is blaming himself for not trying hard enough or not being able to pull himself together or for having a psychosomatic illness. In other words, believing the crap that the medical profession and society in general fling at those who are 'tired all the time'. Been there.

It's true that you don't want a disease that has no treatment but if that's what it is, that's what it is.

@sming, have you had basic blood work to rule out some of the more common illnesses with fatigue as a symptom?

 

[Scarecrow]

oops! created two posts

 

[minkeygirl]

@Scarecrow, I understand, it just makes no sense to me. If you don't feel good you don't feel good If @sming had pneumonia would he blame himself, or adrenal disease? Even if it was psychosomatic, and I'm not saying it is, there is still an illness involved there.

 

[Scarecrow]

@minkeygirl, I suppose that the difference with pneumonia is that it's a 'valid' disease that any doctor would recognise. Fatigue on the other hand, without evidence of a 'valid' disease, is a red flag for psychological problems as far as a great deal of the medical profession is concerned.

Personally I no longer believe in the concept of psychosomatic illness. I used to think I had one, then I thought 'I'm going to beat this thing' and then look what happened!

By the way, I admire your thinking. I wish I'd got to your position of wisdom (not beating yourself up) a lot earlier.

 

[minkeygirl]

You're nit picking about a general idea.

Even after I first got sick almost 20 yrs ago I didn't blame myself. Sure I have wondered what would have happened if I turned left instead of right, but I don't dwell in it.

Blame serves no purpose and only causes more anguish.

 

[MeSci]

I'm new to CFS so forgive the potential duplicate question, it's not easy an easy topic to search for.

Is it possible for CFS to exhibit the following symptoms during the day:
0500-0900: fatigue
0900-1500: little/no fatigue
1500-1800: fatigue
1800 onwards: little/no fatigue

Thanks, Pete

Yes.

I sometimes find that the change comes after a bowel movement. The gut seems to be strongly involved, at least for a substantial proportion of us, and it may be via the vagus nerve.

I noticed a strong gut-function/weakness connection long before ME-proper. When I was bloated, I was weak and woozy. My legs in particular became weak. My doctor of course dismissed the possibility out of hand, saying something like "They can't possibly be connected"!

 

[Scarecrow]

You're nit picking about a general idea.

Or you're missing the point? (I don't mean this in an aggravating way - very difficult with the written word sometimes.)

 

[Dr.Patient]

Yes.

I sometimes find that the change comes after a bowel movement. The gut seems to be strongly involved, at least for a substantial proportion of us, and it may be via the vagus nerve.

I noticed a strong gut-function/weakness connection long before ME-proper. When I was bloated, I was weak and woozy. My legs in particular became weak. My doctor of course dismissed the possibility out of hand, saying something like "They can't possibly be connected"!

Could you please specify what happens after a bowel movement, thanks.

 

[optimist]

Yes.

I sometimes find that the change comes after a bowel movement. The gut seems to be strongly involved, at least for a substantial proportion of us, and it may be via the vagus nerve.

I noticed a strong gut-function/weakness connection long before ME-proper. When I was bloated, I was weak and woozy. My legs in particular became weak. My doctor of course dismissed the possibility out of hand, saying something like "They can't possibly be connected"!

Before I got ME I would normally get very tired after eating a dinner - I though it was normal, but after ME I've started to wonder how normal it was...

 

[sming]

I'm not sure why you beat yourself up over something you have no control over. A waste of energy IMO.

You don't want a disease that has no treatment.

I know it's a waste of time but when you have OCD and depression, your brain disagrees. Like I said, IBS and refractory depression don't have treatments either so it's nothing new. I'm not making light of CFS here, I'm just highlighting that it's not new territory for me.

 

[sming]

@sming
Exactly right on the OI=orthostatic intolerance

AT = anaerobic threshold. It is determined using a CPET test (an exercise test on a bike). Most, probably all, ME/CFS patients have abnormal CPET tests indicating problems with aerobic metabolism so that we are doing anaerobic exercise during activities of daily living. That is, our bodies use anaerobic glycolysis for most daily activities (metabolic equivalent to hardcore training for most people) instead of the normal aerobic metabolism. This causes many difficulties with physical activities so many of us are unable to work and largely housebound. Some of us are bedbound.

If you have ME/CFS and are still working, I strongly suggest you get yourself into the care of a top ME/CFS specialist so that you stay that way. Many of us started with mild symptoms like yours and deteriorated over the years because we weren't getting the right medical advice and treatment. Proper pacing is critical slowing the downward slide. Patients who get the right care within the first 3-5 years of the illness have a much greater chance of remission than patients who don't. No sense in missing that golden window.

There are only a handful or two of top ME/CFS specialists -- very, very few in most parts of the world -- so most of them have long waiting lists. I suggest you get on several waiting lists now.

awesome post, thank you. Do you have any recommendations for doc's or clinics in NYC? I'd like to find out my CPET results. I do wonder about days like today when I've been well all day. Would that affect CPET results do you know (i.e. how bad you are feeling at the time of the test) ?

Regarding the "golden window" - it's out the window. I've been like this for at least 10 years. I just always put it down to depression & IBS. Quite understandably I'd say. I've had several conditions misdiagnosed already so it wouldn't come as a surprise.

I am still working, just. I've lost jobs due to my conditions and am constantly worried about losing my current job. Thankfully so far they've been very understanding when I've been unable to work.

 

[sming]

Yes.

I sometimes find that the change comes after a bowel movement. The gut seems to be strongly involved, at least for a substantial proportion of us, and it may be via the vagus nerve.

I noticed a strong gut-function/weakness connection long before ME-proper. When I was bloated, I was weak and woozy. My legs in particular became weak. My doctor of course dismissed the possibility out of hand, saying something like "They can't possibly be connected"!

Wow. How did I not discover this (i.e. CFS / gut relationship) before? I searched many times for exhaustion & IBS links and posted quite a few times too. My well-being and energy is highly linked to BM's. I've said to literally 10 doctors "when my IBS is bad, I feel like I have the flu. When my IBS is good, I am good.". Blank expressions ensued every time.

 

[sming]

Nice thought but impossible unless you have someone to take care of your every need. For some the simplest task is hard. Mental exertion is just as exhausting as physical exertion.

Anyone who has to work like @sming or live has to exert themselves.

not to mention having 2 kids. Sadly my eldest has picked up on my slothliness and my IBS and prefixes requests with "if your belly is OK, ..."

 

[sming]

Both good points @minkeygirl but I suspect that sming is blaming himself for not trying hard enough or not being able to pull himself together or for having a psychosomatic illness. In other words, believing the crap that the medical profession and society in general fling at those who are 'tired all the time'. Been there.

It's true that you don't want a disease that has no treatment but if that's what it is, that's what it is.

@sming, have you had basic blood work to rule out some of the more common illnesses with fatigue as a symptom?

you hit the nail on the head. If everyone tells you there's no reason to be unusually exhausted, you end up believing it and beating yourself up (well, headcases like me do anyway). One of the main tenets of depression is being too hard on yourself and having unrealisticly high expectations. Bingo.

 

[sming]

@Scarecrow, I understand, it just makes no sense to me. If you don't feel good you don't feel good If @sming had pneumonia would he blame himself, or adrenal disease? Even if it was psychosomatic, and I'm not saying it is, there is still an illness involved there.

I've tried the "would you beat yourself up for having cancer?" argument many times and my OCD demolishes it instantly. With OCD you can't "win" any logical arguments since it biologically cheats. Trust me, I have the medical bills as testament.

 

[minkeygirl]

I have OCD so I get that part if it.

Well you need a diagnosis. So time to get some labs done.

 

[SOC]

awesome post, thank you. Do you have any recommendations for doc's or clinics in NYC? I'd like to find out my CPET results. I do wonder about days like today when I've been well all day. Would that affect CPET results do you know (i.e. how bad you are feeling at the time of the test) ?

I don't know that we know yet if doing the CPET test on a good day or a bad day makes a difference. There is SO much research still to be done in ME/CFS.

I'm not really current on the specialists in NYC. You could search the forum for "specialist NYC". That would probably best done using the Google site search. There's a link to it near the bottom of the Forum homepage. You can also check in the ME/CFS Doctors Forum here at PR.